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Treatment plan allows Puget Sound student-athlete to manage sickle cell trait

By Brian Hendrickson
NCAA.org

Puget Sound football coach Jeff Thomas rarely sees an athlete like Nassar Kyobe at the Division III level.

The 6-foot-3 defensive back, Thomas says, is so explosive that he can touch his elbow on a basketball rim. He can also power-clean 315 pounds with such polished form that he instructs other team members how to execute the punishing lift. When Kyobe enters his senior season this fall, Thomas believes he’ll be a shoo-in for the preseason all-Northwest Conference team.

Thomas laments that he can’t use Kyobe on every defensive down. But because of some quick thinking by the Puget Sound athletic training staff two years ago, that goal is getting closer.

Kyobe was diagnosed as a sickle cell trait carrier during his sophomore season after severe cramping episodes kept pulling him off the field, sometimes in severe pain. But since the diagnosis, a plan that combines hydration and supplemental sodium and oxygen has helped Kyobe develop into a regular starter at Puget Sound. It’s also turned Kyobe’s career into an example of how the trait can be safely managed if medical staffs are aware that their players are carriers.

“I don’t think we could’ve done more,” Thomas said. “We had all the safeguards in place.”

Growing numbers of NCAA programs have been addressing sickle cell trait as a serious medical condition in recent years after a series of severe complications and sudden deaths pushed the issue into the forefront. Divisions I and II have already instituted testing programs to increase awareness among medical staffs and set up management and treatment procedures. Division III is considering similar legislation. But after experiences like Kyobe’s, some Division III schools are already exploring ways to take action.

The genetic condition results from the inheritance of one of two genes for sickling hemoglobin, which developed as an evolutionary defense against malaria in warm, tropical climates. It is considered benign in the general population, but when carriers push their bodies to their physical limits – as athletes do – the red bloods cells can warp into sickle shapes that can clog blood vessels rather than flow smoothly.

Kyobe discovered what can potentially happen when that sickling effect occurs.

He had been struggling with cramp-like symptoms throughout the 2010 preseason workouts, but nothing compared to what he experienced at halftime of the Loggers’ season-opening win over Pacific. Temperatures hovered in the 60s that September afternoon in Tacoma, Wash., yet Kyobe started cramping up right before halftime – something not uncommon to athletes, but also not expected in the cool Northwest weather.

Kyobe’s legs were cramped from hip to toe by the time he walked to the locker room, and the pain continued spreading into his upper body. He needed help walking to the locker room, then sat in a cold whirlpool for 15 minutes trying to get his muscles to relax.

But the cramping was odd, said Craig Bennett, Puget Sound’s head athletic trainer. The muscles were loose and malleable, rather than flexed and rigid like typical cramping. Yet the pain was persistent.

“It just didn’t seem like it was cramping,” Bennett said. “The consistent nature, and the climate he was in, and the description he was giving about trying to get his breath, those things added up for us.”

It’s a distinguishing sign of sickle cell trait. The cramping sensation can occur when the sickling cells block blood vessels and deny oxygen to muscles and organs. If it continues, that process can lead to a more serious condition called rhabdomyalosis, in which toxins build up in the oxygen-starved muscles and break down the fibers, flushing protein into the bloodstream where it can damage the kidneys.

It isn’t a cramp, but to players it feels similar, making the proper diagnosis challenging to those who have not encountered sickle cell trait.

In fact, it took two more weeks for Bennett to make the connection. Kyobe had been diligent about hydrating to address the cramping issues. He was tested for low electrolyte levels, anemia and iron deficiencies, but the tests returned normal. Yet he still experienced another severe episode during a bye week – when temperatures never broke 70 and workouts were light to allow players to heal.

Those conditions were set to allow the players to recover and feel rejuvenated. Yet Kyobe felt fatigued and ill.

“I felt like I was going to pass out, and I was cramping a little bit,” Kyobe said. “So Craig (Bennett) pulls me out of practice and he asked me: ‘Have you ever been tested for sickle cell trait?’ ”

Kyobe knew little about the condition, and Bennett’s only experience had come from a professional seminar he had recently attended that was put on by Oklahoma head athletic trainer Scott Anderson, one of the leading experts on sickle cell trait. But when Kyobe was tested for various potential ailments, sickle cell trait turned up as the only abnormality – a result that caught Kyobe by surprise.

Both of his parents, Mohammed Kyobe and Trudy Larson, immigrated from Uganda. But while each was an athlete – Larson has run marathons and Mohammed was a boxer – neither experienced symptoms related to sickle cell trait. Kyobe’s sister, Salwa Kyobe, played volleyball and basketball but never experienced health complications, either.

Kyobe, on the other hand, had a severe form of the condition: The cramping would start in his calves or thigh muscles, then spread if he continued to push through the pain. His muscles locked up any time he moved. He couldn’t move his legs. It could even spread all the way to his neck and hands.

“I wouldn’t wish it on anyone,” he said.

Being aware of the trait, however, helped Bennett and Kyobe develop an effective treatment strategy.

Now, starting after practice the day before each game, Kyobe starts drinking four or five 64-ounce jugs of a sport drink to keep hydrated and to replace electrolytes. He eats several bananas, takes electrolyte supplements and drinks a mixture of Celtic Sea Salt and water to replenish his sodium levels. The team also keeps an oxygen bottle on the sidelines during games, which helps get Kyobe’s breathing under control when it’s strained.

“We’ve had to do some unconventional things in terms of experimenting,” Bennett said. “The next athlete we have who has sickle cell trait isn’t going to be exactly like Nassar’s symptoms present, but we have to be ready for our next athlete who has sickle cell trait.”

Bennett has also used Kyobe’s story to educate his peers, presenting it as a case study to the Collegiate Athletic Trainers Society and the Far West district of the National Athletic Trainers’ Association. Puget Sound has also used its experience with Kyobe’s condition to develop its own education initiatives for current and incoming student-athletes, believing that awareness of a trait carrier’s status, as well as the symptoms and how to respond, is the best form of prevention.

“Am I glad we know about it now?” Bennett said. “Yeah, because now we can help him participate in the manner he wants to participate.”

And that’s where Kyobe’s story has met with a positive outcome. He still experiences cramping sensations, but it’s become more controllable thanks to the preparations and safeguards Bennett has put in place.

As a result, Kyobe played all nine games last season, tied for the team lead in pass breakups (three), and led the Loggers’ defensive backs in tackles, both solo (26) and assisted (54). He will step onto the field for his senior season this fall confident that he each down he plays will be in a safe environment.

Now Kyobe hopes other athletes will hear his tale and understand the value of awareness and education in preventing sickle cell trait-related health issues.

“It’s good to be educated,” Kyobe said. “Lord knows how many bullets I’ve dodged trying to fight through it.”